For anyone that knows me, knows that I am a talker. I found myself in Indy having a hard time talking, on my bad days I couldn't articulate what I wanted to say, I couldn't find the words to describe my pain, my worries. My, wheel turning, brain was just moving too fast for me to find the correct way to say even the simplest sentences. I find it easier now, whether it be because of time passing, being home, or being surrounded my friends, family and support. Talking, to me, is therapeutic it is a release. But at the same time, as I talk so calmly so descriptively about our experiences, from bedrest, to seeing my boys for the first time so fragile and helpless, to the whole foggy day of Conor's passing, it just brings on floods of emotion and memories.
The night the boys were born, Blake was so sick. He was swollen and requiring a lot of support and we were not really suppose to touch or stimulate him. However, with Conor we were allowed to be at his bedside and were actually informed we could touch him. This of course I think was because God knew we needed our time with Conor that night, and Blake would another day with us.
I remember the first time I got to touch Conor.
I remember Zach and I laying our hands on his little body.
I remember a nurse asking if we wanted a picture. A picture of Zach and my hand laying on him.
I told her no. I was so tired, so worn, and I sure we would be able to get that picture later the next day after we had both rested.
I said no. (sigh)
I said no...and that I remember so clearly-- but why?
I'm not sure...maybe a little guilt, why didn't I get the magnitude of that moment? We just don't know the importance of every moment, of capturing every memory, being thankful for every breath, every day, every little milestone...until something so special, someone SO important is stripped away from us.
It isn't until a tragedy happens to you personally... that you get it, at least I didn't. Tragedy strikes and you begin to reflect on your life. Thinking back on all the trivial things that used to be such a big deal, realizing now how petty some things really are.
From the house, clothes, parties, your car,... I used to care about things that mean so little to me now. I remember when my doctor told me at my 19 week appointment that at 28 weeks if not sooner she would be placing me on bedrest... I was so upset. BEDREST? I won't get to see my friends, go out, work. I actually remember crying about it, "how will I make it weeks on bedrest? I can't do anything? This is going to be the worst." But now having my bedrest stripped from me, and my boys taken so early I just remember begging God for one more week...just one more day...another hour even. I am not perfect, I see my imperfections so clearly now. I find myself at times being selfish, mad at trivial things, and sometimes I know I say hurtful things to the people I love the most. And why? I struggle, I have bad days, many more than I like to share. Some days hit me like waves. Waves of raw emotion at the surface, you can see it in my face, my demeanor, I wear my emotions on my sleeves for all to see. These waves hit sometimes without warning, stemmed from a lyric in a song, or a facebook post that seems so maddening to me "How could someone complain about their screaming child when I don't have mine?", and then sometimes nothing triggers it except longing. Longing for my baby.
There are many days that I will remember as life changing but the day Zach and I buried our son will be the day my life changed forever. My life became clear, became about something SO much bigger than me. I learned to place my trust back in someone bigger, to lean not to my own understanding. Days like Wednesday and Thursday prove that I placed my trust in the right hands. I know Conor also is still with us and he is working so hard as his new role, not as our child, but as a guardian angel. I know after this weeks appointments with Blake that someone's hands are on him helping him, helping him to succeed in all aspects of life, someone is helping to mold him, and I as a mother can only hope to believe that Conor has so much to do with Blake's progress.
Wednesday Blake and I went to the pediatrician as I said in my previous post. The dreaded 6 month vaccines but a part I didn't mention was his progress, Blake is on a steady track of weight gain, growth, and healing. All of Blake's old surgery incision are healing well, the doctor even thinks some of them have shrunk as he has grown. His pocket of fluid that was thought to be a hernia has almost completely dissolved. Blake's lungs are clear, his eating habits are where they need to be and are increasing daily! He is in all since of the word thriving! Thursday was the big test with therapy. The first developmental pediatrician appointment we had was very disheartening. The doctor was, for lack of a better word, so negative! He had told us the worst case. He said Blake looks good but his legs, neck and hips were tight. He was exhibiting a type of tremor in his legs called ankle clonis that could go away but could also worsen. He said Blake may eat fine now, but quite possibly could stop eating all together as he ages. He could do this BUT BUT BUT BUT BUT.... we try to focus on whats before the but, what he is doing. Because as I mentioned earlier we are just thankful for every day, hour, minute we are blessed to spend with him, and why focus on the negatives when there is so much positive!?! Therapy started at 0900 Thursday morning, I had already convinced this would not go as well as his first PT a few weeks ago, he was fussy, has had a low-grade fever because of his vaccines...I was just sure he was not going to cooperate. (WHOOPS there is my negativity- and I was just gripin about others!) But boy was a I wrong!! That boy woke up happy and ready to go! LET ME EXPLAIN. For therapy Blake is held up against a standard of his "Adjusted" age rather than his "Actual" age. Blake's "Actual" age is 6 1/2 months, his "Adjusted" age is 12 weeks just shy of being actually 3 months old (which will be the 29th of this month) in all milestones including rolling over, pushing up, head control, reflexes, and many more factors Blake has meet all but 2 in the 6 month range!! And the 2 that he hasn't meet he does he just doesn't do them all the time (rolling belly to back, and pushing up with arms for longer than a few seconds at a time.) BUT WAIT...that't not even the biggest news!! Blake at 3 months adjusted and 6 1/2 months actual, attempted in therapy to begin learning the elbow and knee milestone which moves to crawling, and even did a few army crawls forward which is an 8 month milestone!! Our therapist kept reiterating how BIG this was. She stated she takes care of approx 20-25 kids at one time, for 22 years and has only had one child at Blake's prematurity do these skills at this age and that is without all the problems Blake has endured in his short life!! I can not explain to you how excited, proud, and overwhelmed that made us feel! We knew he was a miracle but WOW! This is not to say he won't have some obstacles, and we won't still hit some bumps and twist in life...but we have him in our lives and we are just so honored that he is our son.
It are small victories like this that make me think of Conor, and think of what it would be like, how he would be doing, where he would be developmentally? What would his smile would look like? Would he have my green eyes or Zach's blue? Would he have a big personality like myself and Blake or would he be more relaxed like his Daddy?
I wish I knew the answers to these questions, and I struggle with the fact that I just wont. That every day that passes I have to close my eyes and think hard of what his skin felt like, what he smelled like, I try so hard to remember his touch, but mainly, I struggle not to forget these little memories that I have. The compassion of the nurses, the respiratory therapist and Dr. Jaucian at our bedside. We were enclosed in a circle surrounded by family as we said our goodbye, Zach holding me, me holding Conor, Blake right beside Conor in a separate isolette. Conor's whole family, there, with him as he said goodbye to us and hello to the infinite paradise, paved with golden streets, and endless love, and warmth. As hard as it is to remember, it is truly a breath of fresh air to think of the glory that welcomed him at our goodbye, and his fresh beginning. A life of eternity with his eternal Father. Now he can be with Zach, Blake and myself, healthy and pain free....just as our angel instead, and after this week with Blake, we know he is pulling some major strings up there!
Blake's a little stomper...working those leg muscles!
Women love battle scars! That must mean the girls are gonna LOVE Blake!!
Daddy and Blake snuggling.
Blake doing the John Wall dance.
LOOK AT THAT HAIR!!!
"For YOU are my rock and my fortress. Therefore, for Your name's sake, lead me and guide me. Pull me out of the net which they have secretly laid for me. For YOU are my strength."
It has been brought to my attention that I broke my promise as to writing updates yesterday... (big sad slash OOPS face over here!!) Blake and I had quite an adventure yesterday with a trip to the hospital for labs, that didnt actually get drawn...a low grade fever with some major cuddling time...and a long over due nap for the both of us!! So...excuses aside I truly just didn't write one!! But I do so solemly swear to write a full report from therapy and his doctor appt tonight after I get home from work...scouts honor!! Can y'all ever forgive me!?!
I never EVER win anything, but today there is a first for everything! Blake was a total of 10lbs 10oz!! I was only 2oz off while Zach was 4oz. So technically we were both pretty close...
but a win is a win and I'm taking it!!
(Even though Zach tried to enforce the Price is Right rule and said I went over so I lost...he failed though that point is null and void and I still WIN!)
Blake received a total of three shots, which he...how can I put this since hate is not strong of a word he DESPISED. However, Blake did well with his first shot but I think only because he hadn't had time to realize what was happening, then by the second stick it was OVER. Mommy's heart was broken, Blake's face was red, and well the whole office heard the loudest shrill slash scream I have ever heard! Poor baby was so red I was scared he might stay that way! It was bad enough we were suppose to go get blood drawn and after that third shot and another round of seemingly endless screaming and crying I told the nurse there was NO way I was going to do any more painful things to my lil' man that day. She agreed and set it up for the blood test to be drawn tomorrow. After the appointment Blake slept, and slept, and has slept some more, that was until he woke up at 9 with that pouting lip, and those big blues eyes and cried and cried.
SERIOUSLY BREAKING MY HEART!!
After some much needed cuddling and a small dose of Tylenol, my dear sweet baby is finally,
at least for now.
Because I am slightly worried about my possible 'lack of sleep' I might get tonight and for the next few days though I am going to bed, I have much more to update but it will have to wait until tomorrow!!
Let the guessing begin... It's been a month since Blake's last weight check, and tomorrow we find out if the little man has become even more of a chunker! Last month we were 9lbs 8oz. A few chins later....
Zach's guess- 10lbs 6oz
My guess- 10lbs 12oz
What's your guess?!? I guess we will have to wait and see!
Sorry friends that there hasn't been real updates in a while. Not that I don't have much to say...I ALWAYS have something to say, its just, well there is just nothing new to report!! We have actually been free of doctors visits ALL week...nothing! NO therapy. NO appointments. NO nothing....well that is of course with the exception of Halloween costume shopping, mommy-son dance parties, a flat tire, sleeping, crying and well, of course changing the SMELLIEST diapers! (Some even brought me to my knees..whew...that boy and his stinkiness!) Blake is growing in personality daily, and I must say growing into such a BIG little man!! Blake keeps Zach and I on our toes with the occasional fussy fit, and my occasionally tearful, "What is wrong?!? I don't know what you need!" but we have almost gotten his cries down to a science. He isn't much of a fussier though- he mostly he has us laughing hysterically with his ham of a personality. Blake's expressions change on a day to day basis and he now is an expert on finding mommy and daddy in the room and cheesing REAL BIG!!! Not many smiles going out to poor Aussie though--he does get the occasional lick in! Blake is also becoming more vocal with his ooo's and ahh's- still not super loud or a constant talker..... but that is one trait we are glad he hasn't picked up on from his mommy. Blake is now going to bed around 9:30- 10:00...on bad days he likes to push the limit and try to stay up with mommy and daddy. But for the most part he goes to bed, still in his bassinet (we just haven't gotten comfortable enough to move him to the nursery quite yet!) but recently he will sleep (KNOCK ON WOOD) until around 4:30-5am for a quick feeding then fall back to sleep and not wake up until 8-9am for the day! WE WILL TAKE IT!! Waking up ONCE in the night is like heaven to us! Next week we will have some solid updates with a pediatrician visit, weight check and physical therapy all coming up. But until then...to hold your attention.... PICTURES!! Make sure to make it to the end of this post for information about a Haunted Trail you can't miss out on!
So wide eyed- he was really looking like mommy this day.
Breaking hearts and taking names.
I know its blurry but he as just talking away...Note the hat we have had for MONTHS that we thought would NEVER fit him!!
Aussie had just planted a big kiss on the back of his head!
Our little lion man!
Cheesing as he stares at his mommy!
Oh how he melts my heart!
I was too slow with the bottle he found his thumb to hold him over.
Getting ready to go Halloween shopping.
Ready for a visit with daddy at work!
Such an angel when he sleeps...SEE all that hair?!? Baby isn't bald anymore!
A special smile just for daddy!!
Blake fasinated with his new play time rug.
Check out that grasping skill!!!
Visiting with Grandma Pam...he just couldn't stay awake!
Just a quick note- if you like haunted houses/trails and being scared---do it for a cause this year!!
While Zach and I were at Riley we received a phone call from a father who had a baby in the NICU many years ago. This man, who had never met Zach or myself, found his way to our blog. He quickly connected with the feelings that he read about our NICU journey,especially relating to June 7th's blog Daddy's Boy when Zach after a LONG 2 months finally got to hold our little miracle baby for the first time. After reading this Matt contacted us to be a part of such a great cause! Terror on the Trail in Robards, KY is a Halloween tradition that benefits the Brain Injury Adventure Camp, and one family and this year they have selected to support our son Blake!! We couldn't be more honored to be a part of this yearly tradition and hope that you can spread the word and take the time to visit and enjoy the festivities! So go out this weekend or next and
Today my heart aches, it weeps for a family I do not know, it breaks for a child I have never met.
My heart aches because yet another child, too young, has become an angel tonight.
I weep for the mother and father, for I am a mother of an angel. That loss, is devastating.
My heart breaks for all the family of this child, as they mourn for the loss of their loved one.
Tonight I ask that you say a special prayer for the Goodwin family. I have never met this strong family, but feel such sympathy for them. This child, may he be lifted up in prayer, and play in the golden streets of heaven now. May his family be granted with peace, and comfort. Lane has touched so many people's lives and made childhood cancer awareness spread across not just the state but the country.
"And we know that in all things God works for the good for those who love him, who have been called according to his purpose."